Stiff Heart - diastolic heart failure

Thank you for your reply. I have seen a cardiologist and will be having a CAT at the end of the month. My cardiologist also has a stiff heart. I am on water pills and have been taken off on Enapril since I would have coughing fits.

Thank you for your reply. I have seen a cardiologist and will be having a CAT at the end of the month. My cardiologist also has a stiff heart. I am on water pills and have been taken off on Enapril since I would have coughing fits. I have not spoken to my Doctor about clinical trials.

It is for patients with preserved EF. But it also is for people with reduced. My cardiologist from the Cleveland Clinic just put me on it and I have HFpEF. I have read about it and it is applicable for both conditions

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Seek an opinion with a cardiologist who is knowledgeable and experienced about cardiac amyloidosis at a center of excellence.

I’ve been diagnosed w/diastolic dysfunction. But was told not only no worry because everyone Gets it. The problem here is this is old info that hasn’t been given to our heart drs. I was 68 when diagnosed but I had covid 19 & almost died from not being able to breath. I’m 5’3” 104lbs & am 1 of 12 siblings. We r all n our 60’s but I’m the only 1 who got covid & ended up ruining my heart- read the article about how deadly this dysfunction really is from the Cleveland clinic. Because of my age & because drs r lagging behind in covid effects I suffer w/no help. No big deal my heart drs tell me. I was told by a heart dr to go ahead & go to the Cleveland clinic where they will back me up. In other words, give me what I’m looking 4. I have no underlying issues except I take thyroid. this Doesnt Mean I have an underlying health problem. Lots of us Dont. I was @ the library & the right time when a young gal was coughing her lungs out b4 masks were a thing. This blowing ppl off that I deal w/is unbelievable. Heart drs plz understand according to the cleveland clinic heart specialist I could easily die from this. It’s not something to take lightly. & by the way I have low blood pressure. Not everyone can take beta blockers. I’d b on the floor if my bld pressure went any lower. I also have syncope. Thank God I knew what covid 19 involved- it was pneumonia. I took high antibiotics but 4got my prescrip cough med, coughing & not able to breath caused my chest to seize, only then was I able to take a breath. Luckily my gf told me to get my heart checked, I did. My PA told me they’re getting a lot of ppl w/heart damage. Dont take a heart drs brush off because of your age. Keep looking 4 a dr who know covid has damaged so many hearts. Best wishes

Hello Annierae! I haven’t been on this support group for a while. I just got back from the Cleveland Clinic after having a heart Cath. And being moved to grade C diastolic heart failure. I was reading through some of the posts on diastolic heart failure and came across yours, and was astounded to see that your pressures in your left ventricle were exactly the same as mine. 23 to 30! Anyway, I read a lot of your journey and I wonder how you are doing now? My biggest symptom is constant shortness of breath. Of course it’s the worst when I’m walking and absolutely the worst when I’m walking up any kind of incline. Stairs are a real problem. I am on fFarxiga, but it doesn’t seem to have done anything to help. I also take valsartan . I try to walk most days but it’s been difficult in the winter. Now that I know I am stage C I am going to be a lot more careful about sodium in my diet. I’m also going to try to drop 10 or 15 pounds- at any rate, I hope you are doing very well and I’m so glad to see that you went to the mayo clinic. I go to the Cleveland clinic and I’m very happy with them but like all the rest of us wish somebody would come up with a treatment that could help reverse this condition! All the best! Hope to hear back from you

Hello @tcokeefe

Thank you so much for writing! Yes, I went to Mayo in 2020, I just realized how long it had been when I read your post. I'm sorry to hear you're going through this. There is so much to consider when you study diastolic heart failure. I'm so glad you've found a place for treatment who is working with you, and that you're happy with! Yes, I wish someone could come up with a treatment for reversal that would work, too!
Reading your symptoms was interesting. I checked them all off in my head as I was reading them.

As for me, I'm managing. At present I don't have a cardiologist. I do have an internist who is wonderful, and also seems to understand post polio, and it's hard these days to find physicians who do because most have never seen a case of polio. (I'll be 72 within a week, and medicine has changed. My trip to Mayo Clinic was interesting, but not entirely satisfying. They were looking for amyloidosis, but when they didn't find it I felt almost as if they were saying, "Well, we're done here." and that was it. I have to admit it was a difficult time for them, too. They had just been forced to let hundreds of nurses go due to the lack of the covid vaccine, and the place was much more disorganized than I'd ever seen it.
Anyway, having said that. the good news was I didn't have amyloidosis. The not so good news was that they looked no further. The PYP SPECT/CT scan report did contain a note from the radiologist saying, "The SPECT/CT shows decreased activity in the left ventricular myocardium". No one ever mentioned this to me and I didn't see it until well after I was home and looking through my records. They released me as soon as I had the last series of tests and there was no followup visit after that. (I did receive a letter from the cardiologist saying I needed to lose weight, which is true.) Now, a few years later, it doesn't seem any better, but only somewhat worse. I am scheduled for another ECHO in a few weeks. This was ordered by my Pulmonologist, interestingly enough. We'll see what that shows. As far as I know, no one has given me a stage, as they have you. (I think I may have been one of those patients who has fallen through the cracks.)

Anyway, I so hope the best for you, and I'm thrilled that you seemed to have a team that was working for your benefit! It sounds as if you have a great team!
~Annierae

Great to hear from you! I’m sorry about your disappointing experience at Mayo. I think it’s wonderful that they found you do not have amyloidosis and I’m sure it was worth the trip for the peace of mind you must have gotten knowing that people who could give you a definitive answer about that did, and that it was no! Thank goodness! I think it’s good that you’re going to have an echo soon. Please keep us posted as to your results and your progress. I am really trying to watch my diet, but boy, at this stage of the game the pounds really do not want to move. I’m going to be patient and I’m not crash dieting I’m just not eating all the bad stuff I used to eat. My biggest problem is I’m annight time eater. I could care less about eating during the day, but I’m like a vampire, the minute the sun sets, I can’t eat enough carbs! 🧛‍♀️. Well despite our high pressures in our left ventricles, we’re still kicking. I look forward to hearing about your echo! All the best!,

Hello. This is my first time posting. I have a still heart, diastolic heart failure. Also pulmonary hypertension. I have run out of options for a pulmonologist. I live in a small area. They kept my on all sorts of nebulizer meds. I got tired of them so I quit when the pulmonologist left. I’m doing pretty good without them. I have a cardiologist, he’s a laidback doctor. Doesn’t explain too much. Maybe I don’t know the right questions to ask. For years I have gone through”it’s your heart, no it’s your heart”. So I lay it aside for awhile. I would like to know about the stages of a stiff heart. Which goes first, the heart or the lungs? What’s the timeline? I am 72. Can someone be a friend to me?

There are four stages that I know of. I am in grade C (or stage3) and my understanding is that means that there is a structural change to the left side of my heart as well as symptoms which I have had for several years. Shortness of breath, especially when I exercise and extremely when I go uphill or upstairs. I just met with my doctor at the Cleveland clinic, a heart failure specialist, and he says that as long as I keep working at my daily walks and challenging myself and in general, trying to live a healthy lifestyle that I should have years ahead of me. I hope he’s right! I am also trying to lose some weight. Any extra weight is hard on your heart so losing weight and trying to have a regular regimen of walking or something like that is the best thing you can do aside from taking medication‘s that are appropriate for your situation .